Len Lichtenfeld, M.D.

The impact of COVID-19 on our lives has been substantial. It is a once-in-a-lifetime pandemic, but that doesn’t make it any easier to bear for patients with cancer and those who love and care for them.

Increased awareness, practicing precautions such as social distancing, keeping our hands clean and wearing masks represent a few of the measures many of us are taking to stay well. Yet, even as we follow these new rules for preserving our health, we’re finding that other crucial protections have been compromised. We have seen a dramatic decline during the pandemic in hospital and outpatient visits for screening and nonurgent cancer care. The delay of these procedures has led experts to raise concerns that an increase in deaths from cancer may be part of our future. Potentially adding to that trend will be the loss of health insurance that has accompanied job termination for many during the pandemic. The reality is that, without insurance, cancer care is not affordable.

The American Cancer Society Cancer Action Network recently 

 asking patients with cancer about the experiences and concerns they are confronting. The results of the most recent survey showed that 46% of patients have experienced a decline in their financial security and ability to pay for their care, and nearly 25% worry that they may lose their insurance as a result of the pandemic. Mental health is also affected: Because of the combined medical and financial stress, nearly half the respondents have perceived a major or moderate effect on their mental well-being.

These are not minor considerations. The reality is that most of us don’t have an effective safety net when it comes to paying medical bills. One day you are employed and have health insurance, and the next you are unemployed and worried about whether you can afford food and rent, let alone an insurance extension from your employer — if one is available. And let’s not forget that even with insurance, cancer care is expensive, far beyond the means of many of us.

The pandemic has taught us a lot. It has shown us the weaknesses in our system at many levels. We need solutions that will protect us in times of need. Options could include reopening insurance exchanges or providing help with paying premiums. Inevitably, some will argue that the time has come for us to rethink how we as a nation pay for health care.

No matter the solutions, I suspect we can all agree on one thing: No one should have to forgo cancer care, particularly during an infectious pandemic and an economic disaster, because they can’t afford it. If we can solve that dilemma, then perhaps something good will come out of a moment in time that has been so frightening for so many of us.

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The results of the most recent survey showed that 46% of patients have experienced a decline in their financial security and ability to pay for their care, and nearly 25% worry that they may lose their insurance as a result of the pandemic.

Losing Health Insurance Due to Job Interruption During Pandemic Could Jeopardize Cancer Care for Many Patients

A recent phone call reminded me how important it is to consider each patient’s goals when it comes to cancer care, especially as our population ages. As people live longer, I anticipate many will find themselves considering the goals and age-appropriateness of cancer treatment, whether for themselves or someone they love.

My caller described the unfortunate situation of a person over 70 with a diagnosis of advanced esophageal cancer that interfered with the ability to eat and function. Chemotherapy was prescribed in hopes of improving the disease, but toxicities were substantial, and death followed not long after treatment started.

Through all this, my caller related, no one asked the patient or family about their goals and desired outcomes, and there was no assessment of the patient’s functional capacities or ability to undergo such treatment.

The death left the family feeling they had failed their loved one in the final days of life when comfort should have been paramount. They felt they did not get the opportunity to have that important conversation with the cancer care team, and it left them anguished as they mourned their loss.

I shared with my caller that there are tools available to help oncology teams determine whether treatment may be helpful or too toxic for older patients.

The American Society of Clinical Oncology and the National Comprehensive Cancer Network offer excellent online information for doctors, patients and families to help guide treatment in the older patient. This topic is also getting more attention in the general media, given its obvious human interest and impact in an aging society.

Last year, my colleagues at the American Cancer Society devoted the Special Section in our Cancer Facts & Figures report to “Cancer in the Oldest Old”, highlighting the needs of patients who are part of the fastest-growing population in the United States — people age 85 and older.

As more people remain active into their later years, we must recognize that not all of us are alike: Some may be receptive to more aggressive cancer treatment and physically able to tolerate it, whereas others are not. Just as each person’s cancer has unique characteristics, so should treatment decisions be fit to the person, not the person to the treatment.

Cancer is, at best, a difficult disease. Treatment frequently has significant side effects. Together, we must understand that patients won’t get the treatments best for them unless they and their care teams have a mutual understanding of each other’s goals. Overlooking that may leave the patient and survivors with a very real — and perhaps unnecessary &mdash; added emotional burden.

Treatment for the sake of treatment may not always be in the patient’s best interest. It should always be about the person.

It’s important to match therapies to goals and fitness when treating older patients diagnosed with cancer.

Factoring in Age-Appropriateness For Cancer Treatment

Progress in cancer generally comes slowly, in bits and pieces and not in sudden bursts of success. And even when “breakthroughs” happen, it usually takes a long time to confirm that the early results actually make a difference.

So, imagine my surprise when I was reviewing some information recently about the declines in deaths from melanoma. It turns out that, from 2012 to 2016, melanoma deaths declined an average of 4.8% each year for whites and 9% a year for blacks. That is a stunning reversal in a disease that, for decades, was essentially resistant to treatment efforts when it spread through the body.

Why did that happen? Truthfully, we aren’t certain. It could be that people are recognizing melanoma earlier, when it is more treatable. However, most of us would probably point to the introduction of targeted drugs and immunotherapies, which only started to become available at the beginning of this decade. It appears that the impact of these new treatments on this disease has been rapid and impressive — notwithstanding that we still lose too many people to metastatic melanoma.

This raises a question for me: Is it possible we will see similar declines in mortality for other difficult-to-treat cancers, such as lung cancer? My thought is that such an outcome is not out of the question, especially where new treatments like immunotherapy may be effective.

Over the past several years, we have learned much more about lung cancer, and several new agents have been introduced into the clinic. Both targeted drugs and immunotherapies, including new approaches such as combining chemotherapy and immunotherapy, are starting to generate long-term, meaningful responses in some patients — primarily those who have never smoked.

Complementing this improvement is that smoking rates have dropped, and with them the incidence of those lung cancers associated with this chemical exposure.

People I respect are now asking what we need to do to make certain that everyone diagnosed with lung cancer has access to the best tests at diagnosis and receives the best treatment for their disease.

To make that happen, we need to optimize every step of the cancer journey, including prevention, early detection, appropriate diagnosis and staging, treatment, and supportive care. That will mean developing new approaches, such as using data analytics to monitor individual patient progress and system performance, and employing precision navigation to ensure that those in need get the assistance required through every step of the journey.

Optimization could help people with other cancer types, as well.

In breast cancer, some cases are due to inherited predisposition, so ensuring that relatives of these patients are offered genetic testing and enhanced surveillance could save more lives. Better public awareness and access to detection and treatment could reduce dangerous delays in treatment, and measures to help women comply with long-term hormonal drugs could also make a difference.

For rarer cancers like sarcoma, referral programs are needed to get patients to doctors with special expertise.

We need to be able to assure every patient and family that they are receiving the best prevention, detection and treatments available and offer them the support they need to get safely through the journey. If we could accomplish that goal, we would make considerable progress in reducing the burden and suffering from cancer.

Progress in cancer comes slowly, in bits and pieces and not in sudden bursts of success. And even when “breakthroughs” happen, it usually takes a long time to confirm that the early results actually make a difference.

To Improve Outcomes, We Must Find Ways to Optimize Prevention, Diagnosis and Treatment Across Cancers

Here is an interesting situation that I learned about recently, and it has me asking a question I hadn’t thought of before: What is our obligation to those who participated in and benefited from clinical trials but then are charged huge copays to continue taking the drugs they helped develop when the medi&shy;cines get approved and go on the market?

As organizations, pharmaceutical companies and government, we are so focused on encouraging folks to participate in clinical trials that I doubt many of us spend much time thinking about this.

My interest started with someone I know who is a long-term survivor of a usually fairly quickly fatal met&shy;astatic cancer. My friend, who had a particular genetic mutation, was eligible for a clinical trial of an experi&shy;mental targeted therapy and decided to participate.

Lo and behold, the treatment worked well. The cancerous lesions disappeared or shrank — and stayed that way. My friend remains nearly fully functional, with a reasonable quality of life and the ability to continue business pursuits and await the birth of a new grand&shy;baby. I think we can all agree that is a true blessing.

Now it is several years later, and the drug has been approved by the Food and Drug Administration. It will be available to other patients with the same mutation, and I pray they will all have excellent responses.

However, for my friend and others who participated in the trial, literally risking their lives to help others and advance the drug’s research to a successful conclusion, there is a catch: Now that it is approved and their insur&shy;ers will cover the medicine, they are being asked to come up with huge copays, along with their copays for the follow-up scans that are no longer being done as part of the research study.

So I ask: Shouldn’t we at least have the courtesy to supply the drug at no cost to those who took it as part of the trial?

I understand if you are asking why these patients should be treated differently from others who have to figure out how to get access to the drug. However, I ask in return: Can’t we be at least a little compassion&shy;ate in our thinking? After all, these people stepped up on behalf of a lot of other patients, took a huge risk of serious (and possibly even fatal) side effects, and were poked, prodded and scanned for years. Companies will make significant profits off these drugs. Can’t we share a little of the wealth with those who helped make it happen?

I don’t know the right answer. Maybe someone will tell me that providing free drugs to patients after clini&shy;cal trials isn’t ethical or is an inducement to patients to participate. I would be glad if you shared your thoughts: Let me know if you agree or disagree.

I know my friend experienced an incalculable ben&shy;efit from taking the risk involved with that clinical trial. And although having life, and a quality one, is priceless, I think we could be just a bit more gracious in success.

, is acting chief medical officer of the American Cancer Society.

Shouldn’t we at least have the courtesy to supply the drug at no cost to those who took it as part of the trial?

Author | Len Lichtenfeld, M.D.

Losing Health Insurance Due to Job Interruption During Pandemic Could Jeopardize Cancer Care for Many Patients

Factoring in Age-Appropriateness For Cancer Treatment

To Improve Outcomes, We Must Find Ways to Optimize Prevention, Diagnosis and Treatment Across Cancers

Should Patients Have to Pay for the Drugs They Helped Test?